Jan 11

Back Injections – Ouch :(

  
Today I spent half the day in Tameside Hospital. 

Once I was dropped off by my partner, I got booked in by a delightfully rude woman who must love her job! Then waited to be taken to the ward. 

After filling in a “few” sheets of paper work, and sat on my mobility scooter, forced to watch daytime television. I was eventually called and shown to the ward (by a very nice pleasant male nurse), about half an hour after the requested arrival time! 

I think they just ask everyone to arrive, all at the same time. I was to arrive for 10am, though of course we always turn up early so I was there at 9.15am.

In my cubicle I got changed into a delightful, off the shoulder backless little nightie number. I know, you are probably all jealous. But not everybody get the chance to wear such lovely nighties, and just for a twist, I put mine on backwards too! Well hey, it was by choice, honest 😉

I then covered my posterior, with the beautiful furry leopard dressing gown the kids got me for Christmas 😀

Then started the next waiting game. Once I had been brought to the ward and shown my cubicle with bed, and a nightie and blanket I was left to get changed. 

Nobody came to check on me, or inform me of when I would be going to theatre. They didn’t even open my curtains, I waited over half an hour! Then I got one of my walking sticks, and pulled a curtain back so I could be seen that I was there! 

Communication doesn’t take much, but can mean a lot. Just an acknowledgement from a nurse that I was there, would have been enough. I didn’t get collected to go down to theatre, until just after 12 noon.

In the outer room before going into the theatre, I had a cannular put into my left hand. It took ages, as the nurse couldn’t find a vein so he was having to flick my hand with two fingers to make a vein rise up. It hurt, and I knew there would be bruising tomorrow. Never mind tomorrow, it’s already bruised now :(

Then off with the dressing gown, and pushed on through the next set of doors. Ready and waiting was my surgeon, to do the injection for my back and leg pain.

Only to my surprise he spoke about injecting the facets in between the back bones, where I have all the problems of degenerating discs, prolapses and bulging discs.

Facet joints are small joints at each segment of the spine that provide stability and help guide motion. Facet joints can become painful due to arthritis, back injury, or mechanical stress. A facet joint injection delivers a steroid medication which anesthetizes the joints and blocks the pain.

Well that’s the explaination, so you can understand more about the procedure I had done. 

I was not expecting these injections, I had four of them. It was very painful, the surgeon said I did brilliant. Though I did cry by the end, I did well holding back the tears that long! :( 

The surgeon had mentioned about doing the facet joints, and the epidural injections all at the same time. But he was concerned in case my stats changed, and if my body couldn’t take it.

I asked him to please, just do them all and get it over with. As he was doing the procedure he was great, he was totally on top of his game. Watching all monitors, and giving orders and requests to his staff members. He knew I was going through a lot of pain, kept checking I was okay. I wanted it done, I kept saying yes.

Unfortunately by the end of the third injection I could no longer hold my tears back, and j was crying. I felt ashamed of myself! I put up with pain EVERY DAY! WHATS A BIT MORE PAIN WHEN ITS TO DO GOOD? :(

The surgeon decided that once the facet joint injections were done, he wanted to finish and not do the epidural spinal injection. He said I’d gone through enough, he didn’t want to put me through more. That they would arrange my epidural steroid injection for another day, and would send out the appointment by letter.

They very gently helped me transfer back to the bed I had been wheeled in on from the ward, covered me with a blanket and put up the sides. 

I felt sick, the pain was awful. My back hurt more than when I came in, but I expected that. I was just so pleased I hadn’t suffered an epileptic attack, whether I have epilepsy or non epileptic attack disorder. Either are scary, and I didn’t need that on top of the pain. Plus I only spasmed a few times, so my neurological disorders all seemed to behave their selves. For once! 😀

When back on the ward the nurse came and took my blood pressure and stats, she asked about the pain and what sort of level I would put it at. I replied that I live with pain everyday, that it was a little worse and uncomfortable. She gave me number ratings, and said she wouldn’t consider letting me home, until I got to 2 or below. 

She got me a coffee and toast, I’d had nothing to drink for hours and hadn’t eaten since 7pm the day before.

Eventually I could feel the pain lessening, the injections were working! 

The nurse eventually allowed me to leave, and removed the wire finger monitor for my heart and the cannular from my hand. Oops blood spurted all over, my hand was covered. I might not have wanted to give them a vein, but apparently I was a little bleeder 😉 lol 

I’d been texting my partner, and was relieved to let him know he could set off to collect me at last. 

I was so glad to see him, and even happier once home. 

I was so tired, I actually went to bed as soon as we got in. He went to make us coffee, but I was practically asleep by the time he had made it.

He left me to sleep, and when I woke up it was five o’clock, tablet time! It’s as if my body knows all the tablet times now :)

I was in a lot of pain. It is now 10pm in the evening, I’m still in pain. It can take a couple of days for it all to settle, after all I’ve had needles inserted and then steroid medication pushed through into joints not used to any of this.

I am hoping for a good nights sleep tonight, and a new slightly less painful day tomorrow.

I hope my writings both interest, and give you insight to the things that movement sufferers can live through.

Take care folks, and as always thanks for reading :)

Nov 30

And So Life Carrys On!

  
I am sat up in bed, with so much pain in my back that I am beyond crying. 

The pain honestly feels like I am pregnant, everyday, with the weight being pulled down through my back. As if I am having labour pains! 

My hips feel as if they have dropped, again the pains can be excruciating. This is having a massive effect on my ability to move. 

Even last night, my partner woke me, saying I was crying in my sleep. Reason? Once awake, I was in agony from my body pains! 

Saturday I had awoke, and I really didn’t feel well. I had of course all my usual problems and pains, but I just didn’t feel right. 

Unfortunately by late afternoon, I had been sat on the sofa downstairs reading from my iPad. When my head started dropping, I thought I was tired but wanted to finish what I was reading.

My partner had obviously been watching, as he said to me that wouldn’t it be better to put my iPad away and give my eyes a rest? I replied I was reading, I wanted to finish it. My head had continued to keep dropping. Not something I always notice, as I have them quite often. Sometimes they are very small drops, others are large and can nearly topple me over with the weight of my head and the way I am stood when my head drops. I usually make to sit down, and do rest my eyes. I’m not totally sure what these are, and it’s never come up in a conversation with any of my Doctors.

Well back to this Saturday just passed, as I was sat on the sofa. My partner said again to put my iPad down, I don’t remember too much following hearing him say that. It seems I drifted in and out, as I was having a seizure, he said I just went! I was out for a while, then he said I went to sleep. He knew this, because I started to snore! 

  
He kept his eye on me, and when I came round (he had been cooking the tea) said he would put my tea aside for me. I was in no fit state to eat, I wasn’t even back round properly yet.

I saw no reason for this seizure, no upset, no stress. I had done a bit of drawing with some new brush pens I’d got, and a small sketch pad. I had enjoyed being able to draw a little, and colouring and shading. Though the pens are nothing like a brush! If you are interested in looking at my artworks, they are on Facebook page Andrea’s Arts, just search :) 

I had then been reading up and researching about neurological problems, there had been something about a possible cure for Alzheimer’s. Any time you read something about a cure or something to help a neurological disorder, is exciting and can mean possibility of finding help for other disorders. It had been this which I was reading as my head started to drop, but still no reason for a seizure. I hadn’t been on my iPad for very long, so j don’t think the back light from the screen was a factor in my seizure either!?

This all just enforces my belief, that seizures are not always set off by a reason. I’m not saying g that they can’t be, just not all the time.

So I had a bad day Saturday, had to take it easy yesterday Sunday. Now I’m feeling so tired from waking in the night, with crying in my sleep, the pain in all my body. Waking most nights for the toilet, and with a constant dry mouth and breathing problems needing to take sips to wet my mouth and use my inhalers for my chest.

There are times it all gets a bit too much!

I am so tired, I just want to go back to sleep 😴💤

Catch you later folks, and thanks as always for reading X.

Nov 07

I Had A Seizure But Never Knew! :( 

I woke this morning with terrible pain in my head, so painful I couldn’t think straight.

Then my partner told me I’d had a seizure about 5.30am, and did I remember? I didn’t!

I’m not getting better, I’m getting worse. I cried, I had tears streaming down my face. I’m told I have NEAD Non Epileptic Attack Disorder, which is supposed to be seizures due to psychological reasons. 

If I’m having seizures in the night, without any knowledge. How can that be psychological? We have tried to discuss with my neurology consultants before, that we believe I actually also have Epilepsy. Though the only way to get Epilepsy properly diagnosed, is to be wired up to a machine that will try to catch the electrical signals happening in your head as the seizure happens.

Trouble is actually being able to catch you having a seizure, whilst wired up for the collection of information. The consultants as far as I believe, do not want to pay for me to have the testing done. It would mean going into hospital, being wired up and hopefully catching me have a seizure to test the electrical responses. There is no telling how long this may take, a day, two days, or a week? 

So if taken into hospital for a week, wired up but not having a seizure. Then the time is wasted, and that hospital bed costs money. 

Which means I’m left being ill, and my partner having to look after me as I feel like an invalid following these nasty attacks.

He made me a lovely omelet for lunch, and put “A” on it with sauce. It made me smile :) 

  
Whether Epileptic or Non Epileptic, I really would like to know for sure and get the correct treatment. I am left feeling so very ill, with head pains so terrible I can’t take it much more. Even hours later, my head is still hurting really bad. I don’t know what to do?

All I know is I’m laid up in bed, on a Saturday. When I should be with my family, but they are all downstairs. I feel weak, in pain, but the worst thing? The upset that I feel of not knowing, not bring in control of my own life.

Plus on top of all this, my leg spasms are killing and my back too. 

I feel I’m just left to cope on my own :(
Sorry, not a very happy post but then life isn’t always happy is it 😢

Thanks for reading folks X.

Oct 21

I Wish….

  I wish I was here, in a mystical land.

Where no pains exist, from feet up to hands.

Where there is only laugher, and joy to be had.

A place I can live, where there’s nothing that’s bad!

 © Dystonia & Functional Movement Disorder Sufferer

Oct 02

Tired!

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I have no energy today, it has not been a good week. I have had two seizures and ongoing spasms throughout the week, which leaves me feeling extremely tired and very weak.

After a seizure, I find I really need to sleep. It is as if my head needs to repair, but I have to lay down I don’t have a choice.

Here is some information on how to look after a person having a seizure, and most important is that you don’t act scared. Just stay calm and as the seizure stops, tell the person they are not alone and they are safe.

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I desperately wanted to put the back up on this site that I have, it is just a month or so short of the first year I started blogging. I am thinking I can put all those posts back on, then write how I lost my site and everything with it. Then I will restart from there, it is a great shame, but could also be a good way of moving forward as things have changed so much.

Well I need to rest, nothing new there then as I am always fatigued!

Catch you later folks :)

 

 

Sep 25

Hi folks!

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Hi if you have taken a look in the last week, you will have noticed that my blog had disappeared. All my own fault, I messed up during having a bad head day. Whilst logging in to do a blog post, I forgot my password and blocked myself out!

i tried to get back in, had not backed my blog up since the first year and so have lost years of posts. May it be a lesson to my fellow bloggers, backup your databases! :(

I am so very, very lucky to have GREAT SITE HOSTS. I have to say a massive THANKS to “Cloud Nine Hosts”! :)

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http://www.cloud9hosts.net

 

So here I am pretty much starting over, though I think once I have reset the sites look I may try to load the first years posts back on. I am umming and arrhing about whether to just start totally afresh. We will see.

Anyway, that’s how my blog stands at the moment. Sad and forlorn, a bit like myself really after having a day of seizures and head pulling from painful muscle spasms from my Dystonia.

I hope to catch up again soon, take care folks :) x